5 Ways to Live Well with Parkinson’s in 2019

How to Live Well in 2019 - Davis Phinney Foundation

It’s hard to ignore the feeling of newness in the air. The letting go of one year and welcoming in a new one and all of the possibilities it may provide.

And, even if you’re not of fan of resolutions, you probably still have ideas of how you can live better in 2019. At the Davis Phinney Foundation, we certainly do.

When we asked around the office, here’s what a few people said…

“In 2019 I plan to live well by incorporating more movement into my everyday activities. Whether that is going for a walk after work, swimming in my neighborhood pool in the summer, or even going for a round of mini-golf with friends. Anything that gets me off of the sofa.”

– Claire Herritz, Development Officer

“I have created a plan that looks at the major areas in my life – Physical and Emotional Fitness, Relationships, Career, etc – and have targeted some things I’d like to achieve in 2019. Then I’ve come up with some tactics that will achieve these goals and hopefully make it my Best Year Yet!”  

– Chris Brewer, Director of Events

“This year I’m going to live expectantly and open my hands to new opportunities!”  

– Raven Anderson, Office Coordinator

As you no doubt noticed, some people are very systematic in creating their living well plan. Others take the 30,000-foot view. Whatever it takes to help you act on behalf of your dreams/goals every day is what matters.

So, what’s in store for 2019? On this blog, we talk a lot about how being active, eating well and connecting with your community will improve your quality of life with Parkinson’s. And they absolutely will; however, today we’d like to highlight the not so usual suspects.

Here are five ways to live well with Parkinson’s in 2019…

Give all of them a try or pick one and see how it goes. The great thing about them is they’re simple, actionable and maybe most importantly, once you reap their benefits, you won’t want to give up on them as most people tend to do with resolutions.

#1 – Create a Ritual

Rituals are those symbolic behaviors we perform before, during and after meaningful events.

For some, their rituals are a manifestation of cultural or religious beliefs. For others, a ritual of tapping a bat six times or bouncing a ball three times before serving are what get them in the zone to perform at their best.

Some people perform rituals to mark a new beginning, to reduce anxiety, to boost their confidence, to minimize their grief or to accept the heaviness of new challenges. Some even perform them to make it rain or to heal or to find what’s been lost.

Have you seen the new series on Netflix called Tidying Up? Marie Kondo, star of the show and author of the Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing goes into people’s homes and helps them tidy up their spaces. One of the rituals she takes very seriously is expressing gratitude to each item one decides to get rid of or give away. She asks the person to hold it in their hand, say “thank you” to it and gently place it in the box or bag where it will take its next journey.

That may sound a bit over the top to some; however, others see it as a way of being decisive, honoring the joy the item brought them at one time and thanking it for how it served them. (Keep reading to find out how all of these actions can help you live well.)

Not long ago we spoke with someone with Parkinson’s who has a lot of rituals when she travels. She said that traveling is unpredictable in the best of times. When you have Parkinson’s, you get used to the fact that anything can happen. Rituals help her feel grounded, ease her anxiety and prepare her for the trip ahead.

Are there rituals you could add to your life to help ease your anxiety? Bring you more joy? Help you live better with Parkinson’s?

 Scientific American – Why Rituals Work
 Benefits of Rituals in Everyday Life by Dr. Deepika Chopra

#2 – Learn something new

Have you noticed that as you age, time seems to go by faster and faster? That’s because when you’re young, your life is full of firsts: the first day of school, first crush, first time away from home, first job, first home, etc. Your brain loves this type of novelty and as a result, it stretches out your perception of time.

Once you get older, however, life gets more routine and mundane and time seems to fly by. Nearly every experience you encounter is a “been there, done that” type of thing. In this context, your brain doesn’t have to work very hard to capture what you’re doing so it can click off and stop storing those memories. When you look back on your week, or even a year, there’s not much to see.

Therefore, one way to make time slow down is to bring something new and novel into your life on a regular basis. You might…

  • Take a class that challenges you
  • Run, walk or ride a new route every week
  • Get your coffee at a different location
  • Travel by train if you’re used to traveling by plane
  • Remodel your house or just move your furniture around
  • Do something you’ve never done at least once a week

It doesn’t take much to shake up the circuits in your brain, but the effects can be long-lasting.

#3 – Label your emotions

As someone living with Parkinson’s, you no doubt experience a variety of conflicting emotions on a regular basis.

We were talking to one of our community members recently, and he described how one of his biggest challenges early on in his diagnosis is that he flip-flopped between feeling grateful that he had a disease he could live a really long life with and feeling depressed and unbearably sad that the life he had always imagined for himself wasn’t going to unfold in such vivid color.

We talked to another woman who said she went into a deep depression after her Parkinson’s diagnosis, and she could barely get out of bed, even though she desperately wanted to.

It’s normal to be flooded with emotions when you’re handing a life-changing diagnosis like Parkinson’s. Or any time you experience a big change, loss or trauma in your life.

However, did you know that by simply labeling what you’re feeling you have the power to reduce the emotional reactivity in your brain?

“…in one fMRI study, appropriately titled “Putting Feelings into Words” participants viewed pictures of people with emotional facial expressions. Predictably, each participant’s amygdala activated to the emotions in the picture. But when they were asked to name the emotion, the ventrolateral prefrontal cortex activated and reduced the emotional amygdala reactivity. In other words, consciously recognizing the emotions reduced their impact… Putting emotions into words—however hokey that sounds—actually rewires your brain circuits and makes you feel better.”

Alex Korb – Author, The Upward Spiral: Using Neuroscience to Reverse the Course of Depression, One Small Change at a Time

So, the next time you’re feeling something, resist the temptation to suppress it or distract yourself away from it and instead bring it to your attention, name it and let it take you on an upward spiral.

#4 – Make a decision and dream big

One of the most popular series we published in 2018 was the Dream Big Series. I think it’s because we all love a good story of inspiration. When we read about or see people doing “big” things, especially people we can relate to, we can’t help but imagine great things for ourselves as well.

While we loved all of the comments we received from people on those posts, some of the most heart-warming were the ones from people who said they were inspired to take on a big dream of their own from reading what others had done.

And, it turns out, deciding to do something is a good strategy for reducing the anxiety and worry that often accompany a Parkinson’s diagnosis or a noticeable change in how it’s progressing.

“Making decisions includes creating intentions and setting goals — all three are part of the same neural circuitry and engage the prefrontal cortex in a positive way, reducing worry and anxiety. Making decisions also helps overcome striatum activity, which usually pulls you toward negative impulses and routines. Finally, making decisions changes your perception of the world — finding solutions to your problems and calming the limbic system.”

Alex Korb – Author, The Upward Spiral: Using Neuroscience to Reverse the Course of Depression, One Small Change at a Time

In other words, we get more benefit from actively deciding to do something than just letting things happen to us. And since so much about Parkinson’s can’t be controlled, taking control where you can by taking decisive action in your life, can be a powerful way to help you live well.

One of the keys to remember though is that it has to be something you want to do. For example, if you make a decision to go to the gym, but you’re doing it because you think you’re supposed to or you’re guilted into doing so, you won’t get those feel-good feelings. Instead, you’ll just feel more stressed.

So, if you’re tired of just thinking about your dream, big or small, and you’re ready to do something about it, be deliberate about your decision and make sure it’s something YOU want to do. Then, not only will you get a pleasure boost from making the decision, but you’ll also get all of the pleasure from actually doing something that means something to you.

Want to share your big dream with us? We’d love to hear about it so share it in the comments below.

Want to join us for one of our famous fundraisers and pursue a big dream at the same time? Learn more about how to get involved in 2019 here.

“In order to live well in 2019, I’m going to replace screen-time before bed with gentle stretching and help my cat reach his fitness goals (he could lose a few pounds).”

– Jessie Zweibel, The Victory Summit® Event Program Manager

“Living well means looking for adventure wherever I might find myself—in the city, in the mountains, on the coast— you can always find a little adventure if you go looking. I’ll be riding my bike and running and climbing and skiing, chasing my teenage kids and eating good food (mostly plants)! This body has to last a while, so we have to take care of it and keep it in shape for all those adventures.”

– Rich Cook, Director of Development

“My goal is to run four half marathons this year and travel with my wife.”

– Alex Reinhardt, Community Outreach Manager

#5 – Trade in your gratitude journal for a stack of notecards

We’ve all heard about how powerful the practice of gratitude is.

As Korb says, strengthening the gratitude circuit in your brain has the power to elevate your physical and mental health, boost happiness, improve sleep and help you feel more connected to others.

One of the many ways that people practice gratitude is by keeping a gratitude journal. This is great, and if this is one of your habits, by all means, keep it going.

However, if you’ve yet to adopt a gratitude journal practice, or you’d like to change things up a bit (see adding novelty in #2 above), trading in your journal for a stack of notecards has the potential to change your life in ways you never imagined. (It only sounds like hyperbole until you do it.)

Here’s how it works.

  1. DECIDE on the month that you’ll start your handwritten letter project. (A month is a great place to start, though most people love it so much they don’t stop there.)
  2. Go to your favorite stationery store and pick out 30 notecards or long form letter pages and envelopes. (You might want to buy a few extra just in case.)
  3. Buy a NEW pen that feels fabulous in your hand and brings you joy each time you touch it to the page.
  4. Sit down in your favorite spot with your new pen and a piece of paper and write down the names of the first 30 people who come to your mind. Don’t overthink it. Just go with whoever comes to your mind at that moment. There’s a reason they will.
  5. Address all of your envelopes. Ideally, you would do this a few days before the start date because inevitably you’ll be missing some addresses, and you’ll need time to track them down, send emails, ask friends and family, etc. Then put a stamp on each one.
  6. Now, take all of your envelopes, shuffle them, and place them face down on your desk or wherever you plan to write your letters.

Now you’re ready to go. On your start date, your job is a simple one: pick up an envelope, write your letter and pop it in the mailbox.

One of the best parts of this project is not knowing whose name you’re going to get when you turn over your envelope. You’ll quickly discover, however, that every single time you turn over an envelope, it’s exactly who you need to write to that day.

There are many reasons why this project, whether you do it once a year or every day of the year, has the potential to fill you with long-lasting pleasure and joy.

Firstly, you’re not just reminding yourself what you’re grateful for and literally closing the book on it as we do with a journal. You’re calling people out for being fabulous, you’re bringing joy to others on a regular basis and the joy they will feel will reflect back on you.

Secondly, you’re deciding to focus your attention on others instead of worrying about yourself. And while worrying actually does give you a positive hit in the short term, because our brains love having a problem to solve, expressing gratitude and giving back to others has longer lasting effects on your ability to live well.

Lorraine Wilson, one of our Davis Phinney Foundation Ambassadors, was kind enough to create a one-page document you can print and keep by your desk to remind you to write your letters. If you’d like to download and print it, click here.

As Korb says,

“Everything is interconnected. Gratitude improves sleep. Sleep reduces pain. Reduced pain improves your mood. Improved mood reduces anxiety, which improves focus and planning. Focus and planning help with decision making. Decision making further reduces anxiety and improves enjoyment. Enjoyment gives you more to be grateful for, which keeps that loop of the upward spiral going. Enjoyment also makes it more likely you’ll exercise and be social, which, in turn, will make you happier.”

And… all of these experiences and actions combined WILL help you live well (and better) with Parkinson’s.

How will you live well in 2019?

We’d love to hear from you. Leave a comment below and share the actions you’d like to take to live better in 2019 with Parkinson’s.

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